On 20 April the second Focus Group was held in Florence, at the headquarters of the Associazione Trisomia 21 Onlus, with parents of children with Down syndrome, as part of the Horizon2020 project "EUROlinkCAT - Establishing a linked European Cohort of Children" with Congenital Anomalies ". The Tuscan Registry of Congenital Facts at the Institute of Clinical Physiology of the CNR of Pisa, in collaboration with the Fondazione Toscana Gabriele Monasterio, is one of the twenty-two partners involved in the project.
Among the objectives of the project, particular attention was paid to the involvement of families of children with congenital anomalies, focusing on four specific abnormalities: congenital heart disease in children treated with surgery, spina bifida, labioschisis and Down syndrome.
Anna Pierini participated in the Focus Group as the first facilitator with the task of leading the discussion, together with the second facilitator, Amanda Neville, President of EUROCAT and Head of the IMER Register - Congenital malformations congenital Emilia Romagna, and Professor Jane Clemensen.
Through the Association 8 parents were recruited (2 couples, in addition to 3 mothers and a father who participated individually) aged between 38 and 58 years.
The discussion was stimulated by the selection of the following keywords: "discovery", "birth", "daily life", "support and information", "Social media and Associations", "future and research".
The parents went through the phases of their experience, from the communication of the first diagnosis, in prenatal age or birth, up to the difficulties with which they clashed for the recognition of the necessary services, both in the health field and in the school environment.
The parents expressed their interest in the project and are available for future collaboration in the perspective of greater involvement of families for a communication no longer oriented only to specialists but also to the parties directly involved. This will make it possible to improve the information required by families of children with congenital anomalies and to establish research priorities, to ensure a more effective dissemination of research results.
20 June 2017
Eurocat Netherlands shares in 7 million euro subsidy for research into congenital anomalies in Europe
18 April 2017
Eurocat, the European network for the surveillance of congenital anomalies, has been awarded a seven million euro grant to establish a research infrastructure, Eurolinkcat, to learn about the health of children with congenital anomalies. In this program existing registrations of congenital anomalies in 13 European countries will be linked to data on mortality, hospitalization, medication and education available in other databases. Eurocat Netherlands, a research group in the Clinical Genetics department in the UMCG, will receive 350,000 euros of the subsidy.
Every year, more than 130,000 children in Europe are born with a congenital anomaly. In the Netherlands, this is 1 in 33 babies. Congenital anomalies are a major cause of childhood mortality, health problems and long-term disability. Eurocat Netherlands records congenital anomalies in the Northern Netherlands and researches factors that contribute to their incidence.
First ten years of life
Within the Eurocat network standardized data are available for children with congenital anomalies born between 1995 and 2014. Linking this data to data in other databases about mortality, hospitalization, medication and education will make it possible to map out the health and school performance of these children over the first ten years of life. The resulting research infrastructure will be available to researchers within the Eurocat network and outside of it.
Social media platform
In addition to the research infrastructure, this funding also provides for the creation of a social media platform, ConnectEpeople, to promote communication between families with a child with a congenital anomaly and healthcare providers and researchers. Through this platform, parents can participate in the design and development of relevant research on four specific disorders: severe heart anomalies, spina bifida, Down syndrome and oral clefts.
The Eurolinkcat project will last five years and is funded by the Horizon 2020 research and innovation program of the European Union. The Eurocat network includes 21 registries in 13 European countries.